Every minute

Last week I found her sitting in a chair with her eyelids fluttering and her hands twisted in a sort of frozen, palsied manner. Even though she has an epilepsy diagnosis, I did not want to assume it was a seizure. She’s done funny, stimmy things with her hands and eyes before. Still I knew, with a sinking feeling, that a Shift had occurred in Rhema. For us, that means a period when our girl suddenly changes before our eyes and behaviors become extreme and we are literally just trying to make it through the day and B and I are scratching our heads wondering what in the world happened?

The timing of the Shift was not ideal. We were already committed to a weekend retreat on the Cape hosted by Brandon’s new company. Following that we’d fly in different directions – Brandon to his work site and the girls and I to Wisconsin for Rhema’s RPM training. Over the weekend we took her to the ER hoping we could rule out anything medically. We received a LOT of help with her gastrointestinal issues, but we left knowing that something was still not right with our girl.

Rhema flew on an airplane 6 months ago and did very well. This time I called ahead to the airport to ask for assistance and they kindly provided someone to help us through the security check. The moment we walked into the airport things went downhill. Rhema could not wait in line and took off running. Hope and I caught up to her, but when I tried to redirect her she flopped on the floor. I knew that by touching her and trying to help her up (when she was already overwhelmed) would turn into a struggle and further escalate the situation. Often the best thing to do is to wait, give her time until she’s able to calm and then continue on… even just a few steps.

But she couldn’t lay on the floor of Terminal A all day. We needed to check bags, get through security and get on the plane. I tried to scoop her up and the rest is kind of a blur.

I remember us somehow getting to the security checkpoint and 3 airport employees trying to help me handle my Rhema screaming, flailing, kicking, knocking things over – well-intentioned, but unfamiliar hands on her. I remember a TSA agent barking at me to restrain my child. I remember someone saying she had to take her backpack off but she was so escalated I couldn’t get it off. I remember all of the people staring at us, unable to hide their horror. I remember inadvertently almost mooning them all because I didn’t wear a belt because I didn’t want to set off the metal detector. I remember the airport staff warning they wouldn’t let us on the plane if Rhema could not calm down. I remember looking for our strewn boarding passes, my bag, and Hope.

I don’t remember how we got through security, but I realized we’d made it to the other side just as Rhema got her bearings and took off for an escalator. The woman who had been sent to assist us apologetically told me she had to go and warned me not to let Rhema run back through the security checkpoint or we’d have to go through the whole thing again. Hope and I kept up with Rhema and tried to keep her safe without touching her. Too many doors, too many exits in airports. We arrived at the gate just as people were getting off the plane we would be boarding. Rhema ran to the gate door as someone yelled, “No, she can’t do that!” I all but tackled her right there and held on for dear life as she screamed and kicked. Hope sat down beside me.

“If we… if we could just sit here,” I said to a Delta employee who rushed over. “She’s just overwhelmed right now… and afraid… and having trouble waiting. But if we can just sit here, I’ll hold her and she’ll calm and feel safe again.”

The woman said, “Ok, but you’ll have to move a bit out of the doorway so people and a wheelchair can get by.” But Rhema’s foot was hooked around the door.

In another century or so I will laugh at the surprise on people’s faces as they deplaned and stepped over us, panting and sprawled out on the floor at the gate door.

A young woman ran over to us, compassion written all over her beautiful face. “Can I help? Is there anything I can do? Anything at all?”

I smiled for the first time that day. “You’re sweet. Thank you. We’re fine. Well no, we’re not fine. But I think… I think we’ve got it. Thank you so much for asking.”

The woman from Delta stayed with us on the floor the whole time. She talked to Hope about school and the teddy bear Hope was clutching. She talked to Rhema about the letter R and how her name began with R and how it was her favorite letter, too. She thanked Rhema for waiting so well. We chatted about her seventeen year-old daughter. I shared about our trip to Green Bay and my deep desire to help Rhema communicate better. She questioned if Rhema would be able to tolerate the flight. I told her she would be ok once we got going, and she believed me. We finally boarded, and just before take-off, she brought a handful of coloring pages, activity books, crayons and other trinkets for the girls. Thank you, R.

I want people to know about the young woman who bravely, kindly asked if she could help. I want people to know about R, the Delta employee who sat with us. The details of our hard day may fade in time, but my girls and I will always remember their kindness.

Things did not get easier. There was the layover in Detroit, the second flight, baggage claim, the rental car process still to get through. I usually have some clue as to what to do. I usually have courage. At that point I had nothing left. I prayed, Every minute, God. I need your help for every minute. Every step. She needs you for every step she takes. It wasn’t easy. But every minute we made it, I breathed thank you. Every minute she waited and every minute she held back a scream was another minute of thank you. Every single step she took without flopping or bolting or fighting was a step of victory. And every minute we fell, we were lifted.

Thank you so much for all the texts, emails, FB comments, prayers as we have made our little journey to RPM training in WI. Your encouragement, your hope for Rhema and our family has meant more to me than words can say. Thank you!

13 thoughts on “Every minute

  1. Praying for all of you. I truly think God puts those people to help along the way to help keep your faith and going strong.

  2. I’m so sorry this was so hard. I’m reminded of a day I was taking my brother for a walk in a neighborhood a ways from home and he stopped and just would.not.get.up. After a long time I began to cry. I just didn’t know what to do, and a kind woman offered gentle words from her front porch. Somehow, in that moment, my brother decided he could get up and keep moving. There are people who have no idea they are little lights in the dark times, bringing peace and hope. Praying for you…

  3. Tears! I would be feeling so sorry for myself and for the whole situation. I know my frustration would rise up like bile as the day wore on, and it would be all that I could do to keep from losing it. The Devil is busy, and he would be all UP in my ear that day. But not you. You are so kind and compassionate, so good. I know you are not perfect – but you come from a place of love, and it shows. You inspire me to be a better mother. I am sending so many prayers up for Rhema – I am praying for health, for breakthroughs, for peace. And I am praying for you. I hope you can feel my hug all the way from Texas. Be kind to yourself. God bless!

  4. Oh I am so sorry that trip was such a struggle to get there. I pray you find new strategies at the camp and rhema can begin to share her world with you. I am glad you decided to bring Hope with you. As a sister of a special needs sibling I was so excited to take sign language classes with my mom to help my nonverbal brother at the time begin to communicate with us.

  5. Oh my goodness, how stressful 😦 I feel exhausted and drained just reading it! You are amazing, your children are amazing. Thank God for His strength every minute, and the kind people he sends along the way. Will keep you all in my prayers xx

  6. I am so sorry. What a stressful time for you all, especially Rhema. So much for her system to cope with. Glad that you got some help from the lovely Delta woman.

  7. Read this with my heart in my throat and tears in my eyes. Oh J, thinking of you and your sweet girls. So much love to you. I have such hope for Rhema and I look forward to reading about the training. xo

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